The Paediatric Task Force predates the IDDI Paediatric Workstream, but the two work extremely closely and have many members in common.
The Task Force fosters global collaboration in paediatric PH, especially in order to maximise the potential of real world data in PH registries worldwide. The mission is to bring people together in order to improve knowledge, encourage research and optimize delivery of clinical care of neonates, children and adolescents with pulmonary vascular disease wherever they live in the world. If you’re interested in joining this Task Force, please get in touch.
Publications:
Acute Vasoreactivity Testing in Pediatric Idiopathic Pulmonary Arterial Hypertension: an international Survey on Current Practice, Lina Caicedo, Rachel Hopper, Humberto Garcia Aguilar, Dunbar Ivy, Dora Haag, Jeff Fineman, Tillman Humpl, Omar Al-Tamimi, Jeff A. Feinstein, Rolf Berger, Erika Rosenzweig, Tarek Kashour, Gabriel Fernando Diaz, Alberto Mendoza, Usha Krishnan, Prashant Bobhate, Stephanie Handler, Antonio Augusto Lopes, Manoj Kumar Rahit, Parag Barward, Carlos Labrandero de Lera, Ian Adatia, Shahin Moledina, Steven Abman, Maria Jesus del Cerro, Pul Circ 2019.
Annual Meetings of the Pediatric taskforce during the PVRI annual Congress: Panama 2011, Cape Town 2012, Istanbul 2013, Giessen 2014, Ghuangzhou 2015, Rome 2016, Miami 2017, Singapore 2018, Barcelona 2019, Lima 2020, Athens 2022, London 2024.
Our Regional Task Forces don't yet have global coverage. If you're interested in starting one, please contact us.
Interested in accessing global data on PH patient experience? Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PHGPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.
